how long is too long

[staeprice]

I'm in limbo... My 7-year-old DD has been on antibiotics for 7 months now. Her last episode and dx of PANDAS was in May 2010. She is on Augmentin XR (1/2 pill 2x/day), prozac, and lamictal. This has been her best school year in her three years of school. She is not 100%, still has underlying OCD with clothing pretty much all the time, not getting better but not getting worse. She has had two blips in the last two months following viruses (tested negative for strep). I had her titers redone in February during one of her blips and they were in the normal range (last May they were extremely high). So... where do we go from here? I get nervous thinking about yeast/gut/tolerance of the antibiotics for long time use. I kind of think she needs a break but there is the "what if?" factor...

 

I'd like to hear what others do with their antibiotics use. Full-timers? Only certain times of year? Periodic use with exacerbations? How long is too long??

[MomWithOCDSon]

Well, this is an auto-immune condition, so, presumably, some level of abx may be appropriate -- even required -- through puberty, potentially. Kids with rheumatic fever (another auto-immune response to strep) are put on antibiotics until they're 18.

 

Our DS14 has been on antibiotics for 17 months, and based on recent experience (he flared dramatically upon an attempt at reduction, even though the reduced dose was well above what's typically viewed as "prophylactic"), I will keep him on abx either 1) as long as I can secure a prescription, or 2) his behaviors and anxiety completely evaporate and stay that way for an extended period, and remain in exile even upon a lowering of his dose.

 

I have every hope and even expectation that his emergence from puberty will toll a new day for his immune system, rendering him better able to fend off microbes without a descent into haywire anxiety. But between now and then, I plan to err on the side of caution. With the help of probiotics and a good diet, I feel the cons of continuing the abx are far beneath the pros.

[Guest TwinCitiesMom]

We have a 14 yo son with pandas. I would say he is in the very early stages of puberty. He has always been in about the 75% for height; however, he seems to have plateaued somewhat. I am wondering if some parents see an improvement after the full onset of puberty? Just curious what role "puberty" plays in pandas.

[MomWithOCDSon]

We have a 14 yo son with pandas. I would say he is in the very early stages of puberty. He has always been in about the 75% for height; however, he seems to have plateaued somewhat. I am wondering if some parents see an improvement after the full onset of puberty? Just curious what role "puberty" plays in pandas.

 

I've wondered that myself, but all I've ever gotten when I inquired (even of medical professionals)were anecdotal responses. All I know as a woman is that hormone cause me inflammation on a regular basis, so it would seem plausible that the rush brought on by puberty could cause a similar inflammatory response in our kids. And then that inflammation would just make the impact of PANDAS that much worse, would it not?

[LNN]

I'm in limbo... My 7-year-old DD has been on antibiotics for 7 months now. Her last episode and dx of PANDAS was in May 2010. She is on Augmentin XR (1/2 pill 2x/day), prozac, and lamictal. This has been her best school year in her three years of school. She is not 100%, still has underlying OCD with clothing pretty much all the time, not getting better but not getting worse. She has had two blips in the last two months following viruses (tested negative for strep). I had her titers redone in February during one of her blips and they were in the normal range (last May they were extremely high). So... where do we go from here? I get nervous thinking about yeast/gut/tolerance of the antibiotics for long time use. I kind of think she needs a break but there is the "what if?" factor...

 

I'd like to hear what others do with their antibiotics use. Full-timers? Only certain times of year? Periodic use with exacerbations? How long is too long??

In the first year that my son had Pandas, I had every intention of only using antibiotics when he showed the first signs of being sick. Like you, I didn't want to use them all the time. But whenever he was off of them, he'd regress and each time, it got harder to recover what he'd lost. Now, his case is complicated by the fact that he may have contracted lyme before he got Pandas. So my experience could be very different than yours.

 

The risks of being on long term abx are real. This tends to be a very pro-abx community, but I don't think many of us started out that way. None of us wanted to have our kids contributing to the next MRSA or wrecking their guts and causing all sorts of new problems. But the risks of re-enforcing that autoimmune response with a new exposure is equally real. The goal is to keep the auto-immune response as calm and dormant as possible. I guess the first thing you have to consider is that if your child has Pandas, then they don't have a normal immune system and some of the thinking you've used about abx in the past might no longer apply to your child.

 

As far as managing the risks of long term abx, you can 1) follow a good probiotics regimen and give an anti-yeast probiotics several times a week 2)check for yeast periodically with a blood test and looking for signs of thrush 3)you can do stool testing periodically for both yeast and for a nutritional check and to check on the health of gut flora 4) periodically check liver functions with blood tests

 

My son's been on abx for 2+ years. For us, it was a choice between having a quality of life and not. No one can tell you what the right answer is for you and your daughter except you. I just caution that either decision has risks - you just have to decide which risks are more acceptable.

[EAMom]

Hi Staeprice,

 

My dd has been on Azith 250mg/day (she's now 5th grade, about 65 pounds) since the end of 2nd grade (so almost 3 years). For us PANDAS/strep resulted in full-blown anorexia nervosa so there was no way in @#$#$ we are taking her off abs until early adulthood, if that at all would increse her risk for another full-blown episode (which took 4mo. and 4 different antibiotics to get under control).

 

If my dd were to enter another exacerbation, we would consider increasing her to 500mg/day azith.

 

If you are worried about the gut, you could consider switching to monthly injectable pen. for prophylaxsis (as they would do for rheumatic fever). Also, be vigalant about probiotics. Or, if you don't want to do injections, you could try oral pen. 2x daily (it is very narrow spectrum and less likely to cause gut issues vs. augmentin).

 

If your dd is reacting to viruses, PANDAS/pitands is still there...and she has a lot of years of strep exposure (and other illnesses) ahead of her.

 

I wouldn't use low strep titers in your decision to stop antibiotics. Lots of PANDAS kids have low titers (mine did) despite PANDAS/ocd severe enough to require hospitalization (with positive cultures).

 

I believe Dr. Latimer recommends antibiotics until early adulthood.

[airial95]

We were on abx for about 11 months, and had gotten to about the same point as you - about 85% back to normal with some risidual (but somewhat manageable) OCD. Our pediatrician had tried to take him off abx a few times before, but he would flare right back up wihin 72 hours. We stopped that little experiment back in May 10. In December, after another 6 months on abx, and switching from Zith to Cefdinir, Dr. Muprhy decided to take him off for a bit. They were shooting for 2 months - but if he had a flare up of symptoms he'd start right back up again.

 

He backslid, but just a bit at first (down to about 75% - a bit more moody). Over the course of the two months, his food related OCD slowly but surely began to creep back in, to the point where meal times have been an issue again. A week before our 2 month follow up (in which we were going to discuss starting abx again) he started with 2 new tics, more potty accidents (he's only 3 so it's a tough to say PANDAS) and doing a strange hopping/clapping thing through the kitchen. On a whim (we still didn't have any violence or rages - which is our biggest symptom) I took him in to the pediatrician - positive throat culture. I took his sister to after hours that evening - positive throat culture.

 

So our pediatrician gave him a 90 day rx for Cefdinir - so we're back on. It's been amazing how much better he's been - I forgot the difference!!

 

In a nutshell - I'm glad we took him off for a little while, it helped us really measure how far he had come, and it gave his system a bit of a rest. We continued with the Omega 3 supplements and Melatonin. We were not anywhere near crisis mode when we took him off, so I think that helped.

 

For us, it was a personal decision too - we didn't like the idea of him being on abx consistently at such a young age, even though we know it may be a possibility for him long term as he gets older.

[Dedee]

Just throwing in my experience. Every situation and every child is different. My oldest son (now 15) has had PANDAS since he was six. Took several years to get appropriate diagnosis and treatment. He had his tonsils out and started daily antibiotics nearly four years ago. He takes amoxicillin 250mg twice daily. So I realize this isn't the strongest antibiotic out there but we have always been fortunate that it works for him. I make sure he gets plenty of probiotics, in addition to his fish oil, daily vitamins, and magnesium. He is actually the most healthy of all my children. He rarely gets sick. He had a cold this winter, which is the first I can remember him being sick in a long time.

 

We have discussed taking him off the antibiotics several times but when it came down to it I just chickened out. We have an appointment to see Dr. Murphy for my younger daughter next week. She is the one who saw my son four years ago and approved the antibiotic therapy (My pediatrician prescribes). I plan to ask her about my son while I'm there if I can remember. My son is doing well so I have been reluctant to change anything, but it probably bears looking at. I will let you know what she says. It's a very hard decision to make.

 

Dedee

[T_Mom]

Hi Staeprice--

 

Our oldest d had very clear-cut PANDAS/PITAND reactions which abated with antibiotics (to about 85% herself again, and steroids kicked the rest of it, so she was back to 100%.)

 

She continued on Amoxicillan (full strength) for the next 18 months...when I then decided to try to cut back (since she had been SYMPTOM FREE for over a year.) We went to half-strength--and at the same time (last summer) she was exposed to strep. (Note: she has never tested positive for strep...but flairs whenever she gets sick, or is exposed to illness in others.)

 

In short: when we cut back she flaired VERY badly (severe OCD, Math skills no longer "grade-able" according to the school, writing deterioration, and wetting herself, no focus due to compulsive thoughts.) It has taken us over 6 months to get her back to a level of functioning that is about 95% herself. (We did a steroid burst which helped tremendously and tried different antibiotics during this time, she is back to Amoxicillan full strength.) She is 13 and I am no longer asking when to cut back on the antibiotics.

 

I can understand your feelings, especially as your child is quite young. In our case, we have decided the abx is necessary indefinitely (for now:)

Edited February 28, 2011 by T.Mom

[P_Mom]

4 years for us. Both sons will be on "until I no longer have control of what they do." (per Dr. Latimer.....suggested until around 20) She doesn't want us to lose the gains we have made. I'm going with it. As one immunologist told me..."proph. doses of antibiotics are nothing compared to what an assault on the brain can do. A brain is a very important thing!." I agree totally! No, noone likes it...but, I hate PANDAS WAY more!

 

I have taken them off for short periods of time here and there. Like when we were totally snowed in up here for a week last year. No exposure...so, I took them off that week and pumped the probiotics. But, I only do that when I am sure there is no exposure. I have also gone from Aug. to Pen VK in the summer sometimes. Just to do a more narrow spectrum thing. It works for us....not saying this approach will work for everyone.

Edited February 28, 2011 by P.Mom

[AmySLP]

My DD 6.5 yrs old, has been on ABX tx for about 9 months straight now, with periods of a few months at a time the year and a half prior to that. In mid-Feb. we had a f/u appt with DR. B (we see him every 10 weeks on average) but I had to cx. as my Nana was ill out of state. I left to be with my family, cancelling our Dr B appt and thus running out of meds. I decided I would let it go and see how she did, as we had been planning a reduction as long as her symptoms had remained stable, as they had been for months. SHe stayed here in NY with my husband to keep her routine (and quite honestly it's a specific protocal to give her meds and sahe does not prefer for any one but me to give them). Well-WHAT A MISTAKE!! I had been gone 5-6 days at whcih time she had no ABX (Aug 400mg & ammox 250 mg, chewables). I returned home to pick her up to bring her to PA when my husband told me she was ticcing worse than ever, with new tics. Got the meds refilled and we are about 11-12 days back on the regimine & the tics are basically gone (except an occassional small vocal tic in the later evening)but we are still trying to get the emotional lability back under control. My Grandmother did pass & I wonder if some of the emotions may be that, but I have learned how valuable these meds are for her. I struggle with the same with my DD4 who has separation anxiety, rages, sensory issues, night time incontinence-Dr B has had us try ABX rounds 30 days at a time, but I don't see a huge difference in symptoms, but I'm beginning to think she may need longer to really see a difference. My 6 yr old responds so quickly each and every time she has a backslide within a few days to ABX. I think that it's so individualized. I know my DD6 will have to stay on these for some time.

 

Amy

[staeprice]

Thanks everyone for your input. We made the decision to take her off while we still have a back-up supply at the ready and March has historically been a good time for us. Pumping the probiotics and for the last three days we have seen positive changes in her mood and activity level. I think we are in a place where we need to try this and see what happens. If we go backwards we may end up having better information diagnostically to understand what is truly going on.